Mesenteric Panniculitis or Sclerosing Mesenteritis

Posted by BillyMac65 @billymac65, Dec 6, 2012

I thought I would start a discussion for patients with Mesenteric Panniculitis. From what I know, this auto-immune disorder has three stages to it, each with differing names (Mesenteric Panniculitis, Schlerosing Mesenteritis, Retractile Mesenteritis). Typically, this appears to be in older individuals with some other under-lying problem (Lymphoma, tumor, diverticulitis).

I have an atypical presentation because I do not have an underlying cause. The doctors seem to be hoping for Lymphoma to appear so they can treat it and have the auto-immune go away. I am interested in hearing from others with this. I had this diagnosed in 2011, so I am interested in hearing more about what this is like to live with. I want to hear from others who also have an atypical presentation. Did is come back? Also interested in hearing from those with Lymphoma. How was the treatment? Did it address the auto-immune?

Pretty much, I am interested in hearing from anyone who has had this, so i can better understand it, and not feel so alone with this!!

Bill

@kimh

This helps a lot! I will discuss everything with my husband tonight! Thank-you. By the way, there was a special on PBS a little over a week ago on the Mayo Clinic and the whole time I was watching it

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I didn't finish the post lol! The whole time I was watching the special, I was wondering why I wasn't already there!

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@kimh

Hi @steve_b. May I ask what celiac plexus nerve block actually is? For pain, I am currently on Targin (I'm from Canada, so our medication names may be different than in the States) which is a mild slow release oxycodone (that does not cause constipation) and the typical oxycodone for breakthrough pain. The oxycodone knocks me out and I would like to learn more about celiac plexus nerve block and if it could be an option for me.

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Hi @kimh, You can get a better explanation by googling it but basically they locate a nerve bundle in the middle of your abdomen using a scanner called fluoroscopy or EUS (endoscopic ultrasound). Then they kill the nerves using alcohol injected through a needle. Usually it works for a few months to years depending on nerve regrowth. It's typically used for intractable pain from chronic pancreatitis or pancreatic cancer. I don't know if links work in this forum but here is a case study for MP.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436925/

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@steve_b

Hi @kimh, You can get a better explanation by googling it but basically they locate a nerve bundle in the middle of your abdomen using a scanner called fluoroscopy or EUS (endoscopic ultrasound). Then they kill the nerves using alcohol injected through a needle. Usually it works for a few months to years depending on nerve regrowth. It's typically used for intractable pain from chronic pancreatitis or pancreatic cancer. I don't know if links work in this forum but here is a case study for MP.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4436925/

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@steve_b I am not ready for that. One mistake…one mm off seems tragic

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I didn't think about that….but it seems like a wonderful dream to be off the oxys….

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@pcfromfm

Hi Kimh -I may have missed some of your past posts -forgive me if I’m old news. I’m wondering if you have been able to find some triggers or are on a diet of some kind? I’m in Canada and have little to no medical help. I finally have this body fairly manageable -but after many years!

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I avoid nuts, seeds, skins, too much acid, alcohol, fried food, rich food and desserts. I don’t drink soda or regular coffee (only drink acid reduced coffee). Bless you. Hope US doesn’t go the way of Canada’s health care.

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@kimh

Thanks! And I appreciate that everything can be found indoors! I do know a little something about Minnesota winters lol!!!!

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A great place. Good luck.

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@johnbishop

I hope you find some answers and help. In case you have to come to Rochester Mayo Clinic Campus here is some info that may help you get around. Nice thing about Rochester in the Winter is you can get to all the buildings without going outside.

Rochester Mayo Clinic Concierge Services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
Mayo Building – Mayo Clinic Patient Video Guide – Minnesota – YouTube

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Thanks John for adding the Mayo info.

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@kimh

Thank-you for your very warm wishes….actually nice that someone wants to respond to me….

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I have been there, too, needing support. This is the blog site that led me to Mayo where they did an exploratory and found my MP was symptom of underlying rare cancer, they did exploratory and saved my life. I know I could not have endured the pain of my symptoms any longer without exploring more options. I understand the economics and in this age of “Go Fund Me Page” I would suggest that might be an option for those who are suffering so much without relief after exploring all seemingly possible options.

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@kimh

Hi @pcfromfm
Hahaha, you are not old news!! I check the Mayo posts daily, but once I started to feel a little better, my contributions became less and less. Human nature!!! Anyway, my GI is slowly weaning me off prednisone (because I have been on them since August 2017), but this weaning down had currently sent me into a relapse. He is probably the top GI in my city, but I think even he is getting frustrated! I am currently still on a very low dose of prednisone and tamoxifen as well, but I think he may start looking into immunosuppressant medication which seems a little scary to me. I honestly don't know what else to try. I have heard about thalidomide, but it is apparently very difficult to get here. At the moment, he hasn't given me any direction so I am on pain medication and trying not to sink too low into depression. I haven't found any diet triggers, but because of my hypothyroidism, I am already on an extremely low carb diet. I have also been cutting out foods like eggplant which I read are inflammatory. I actually find that physical activity is the biggest contributor to my pain. I've had to give up yoga, which was so healing to me in other ways.

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For your interest…I live in Aussie and my gastroenterologist has suggested a choice between….Azathioprine; Thalidomide; Cyclophosphomide or Colchicile if my pain gets any worse. I am only on tomoxefen now after coming off 4 mths of steroids. Pain good at present.

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Good to know! My GI is recommending that if there is no improvement to start moving towards azathioprine or colchicile too. I have heard about some success with thalidomide, but I think it is difficult to obtain here in Ontario (Canada).

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Hello. I recently went through a work up for abdominal pain and the CT scan suggested Mesenteric panniculitis. I have so many questions, but I believe the most important one is what I should be discussing with my Dr. I have a consult with a surgeon in a week to discuss a surgical biopsy. Is there a typical protocol for treatment? Also, is this something I should be following up with at the Mayo Clinic? Thanks in advance for any suggestions.

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Hello @kleniek
I have been finding that although most of us have 'similar' symptoms etc., there is still a 'try and see' approach when it comes to treatment. I have been battling a second relapse for over a year now, trying to get on the treatment that will help me back in to remission. Maybe this is due to lack of research? Anyway, when I was first diagnosed, (also surgical biopsy) I was put on a strong steroid regimen. I was in remission for over two years and 'forgot' that I ever had this disease. Then by August 2017, I relapsed. I was put back on a steroid regimen (Prednisone), but not as harsh of a dosage as the doctor was hopeful that we caught it 'early'. Unfortunately, I have been on Prednisone ever since. Each time I try to wean down, I seem to go through a relapse, which tells me that the steroids are still effective. My doctors (I'm from Canada btw) are keeping me on a low dose for the time being, but have also prescribed tamoxifen and azathioprine too. I am finding this (can we call it a cocktail??? lol) combination to be helpful for the pain, but am currently experiencing some side effects of the other meds. Livable, but I am still hopeful for the days of remission. I will just end by saying to make sure that you have a good GP and GI. I also have a rheumotologist on my team. I have been lucky in that my GP and GI have been working hand in hand to try to help me. I am their only patient with MP, but thankfully they are not too proud to reach out to colleagues for advice. I hope my little journey can help you…

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@kimh

Hello @kleniek
I have been finding that although most of us have 'similar' symptoms etc., there is still a 'try and see' approach when it comes to treatment. I have been battling a second relapse for over a year now, trying to get on the treatment that will help me back in to remission. Maybe this is due to lack of research? Anyway, when I was first diagnosed, (also surgical biopsy) I was put on a strong steroid regimen. I was in remission for over two years and 'forgot' that I ever had this disease. Then by August 2017, I relapsed. I was put back on a steroid regimen (Prednisone), but not as harsh of a dosage as the doctor was hopeful that we caught it 'early'. Unfortunately, I have been on Prednisone ever since. Each time I try to wean down, I seem to go through a relapse, which tells me that the steroids are still effective. My doctors (I'm from Canada btw) are keeping me on a low dose for the time being, but have also prescribed tamoxifen and azathioprine too. I am finding this (can we call it a cocktail??? lol) combination to be helpful for the pain, but am currently experiencing some side effects of the other meds. Livable, but I am still hopeful for the days of remission. I will just end by saying to make sure that you have a good GP and GI. I also have a rheumotologist on my team. I have been lucky in that my GP and GI have been working hand in hand to try to help me. I am their only patient with MP, but thankfully they are not too proud to reach out to colleagues for advice. I hope my little journey can help you…

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Thank you for your response. I’ve read a lot of the stories and understand that this is affecting everyone differently. It gives me hope that it can be managed with the right “team”. I’ve been in pain for about 3 years on and off and finally found a physician who was willing to go beyond looking at my diet and blaming IBS. Granted I do feel better when I am eating right, but I knew there was more to my pain. I wish you the best with treatment and am thankful I found this site for support! I would be happy to be involved in any future studies.

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I have been in and out of the hospital for the last year. They diagnosed me with MP after a CT that I had to beg them to take of me after a year of abdominal and lower back pain.

My doctor literally started googling MP when I got my results back from the CT. She said she had never heard of it and that she did not know what it was. So I left with no information.

I am waiting to get an appointment with a gastro specialist but in the meantime I don’t know how to process this and how I should treat this.

I live in Norway and we are really far behind in medicine than other countries. Meaning that the doctors don’t have a lot of experience with rare diceases.

So here I am diagnosed with something that I don’t know what is and have no idea how I should treat.
It scares me a lot because I am afraid things will get worse if I don’t treat it right.

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Hi @jessienalu
I want to say "welcome", but….instead I will give you a quick recap on my experience and hopefully it will help you when you get to your gastro appointment.
Two weeks after suffering a severe back trauma (bad fall on black ice), I came down with pain in my right kidney area that radiated to my right abdominal area. After 3 CTs, a week long hospital stay (trying to get the pain under control) and a surgical biopsy (to rule out lymphoma), I was formally diagnosed with MP. I was put on steroid therapy (Prednisone) for about 6 months. I was on 40 mg. daily for three months and began weaning down 5 mg. weekly until I started suffering from esophageal spasms (side effect of Prednisone) when I was hospitalised for another 10 days and eventually taken off the Prednisone. While Prednisone brings it's gifts (weight gain, sleeplessness, facial hair, moods), it also put me in remission for about 2 and a half years. And I mean complete remission where I was beginning to forget that I even had MP. Unfortunately, after a stressful situation (my father was diagnosed and ended up dying of cancer all within a short 3 month period), I fell out of remission. That was August 2017. I am still off work trying to get this thing under control. At the moment I am on (still!) Prednisone 5 mg. daily, Tamoxifen 20 mg. daily and Azathioprine 150 mg. daily. This 'cocktail' has given me some improvement pain wise however, every medication brings side effects which I am willing to deal with as long as the pain begins to go away. I hope that this helps you. Someone on this site also recommended a book called, "How to be Sick" by Toni Bernhard which comes from a Buddhist point of view. I am not a Buddhist, but found this book extremely helpful while trying to deal with a mind that wants to do so much combined with a body which restricts me from doing those things. I hope my experience can help you.

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